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Hello all,

I am not sure what to write about today, or how much to say. I am bored of writing how I am, which symptoms are bad and so on, though I know it serves a purpose for me in terms of tracking my symptoms and health, which is one of the reasons I do blog. I am bored with it though, and so it seems is my partner, understandably. We want to escape the never-ending discussions of how I am, which parts hurt and so on. But how? I honestly do not think it is possible.

I do not need to tell you readers who are also ill and living with other people the difficulties of being in any relationship when there is an unwanted entity (the illness) hovering around affecting everything we do, or more usually cannot do. Things are ok, and we are coping but I am just feeling a bit emotional at the start of this year.

As well as wanting me and more especially my partner to have a break from it all, I am deeply worried about a friend of mine who is in hospital. I have heard from her dad that she has had an emergency operation and is very unwell, but nothing for a few days and I cannot help but think about her and her start to 2011. She has not even been able to open her Christmas presents yet. She is on my mind a lot.

I think I am also just in recovery from going away at Christmas. I feel a sense of achievement and adventure at having gone away – I spent a few days with my partner’s family. It was good and I am very glad I went in many ways. I was made to feel really welcome and they tried really hard to accommodate my needs and it was nice to feel part of something but it was also pretty hard for me at times.

The main issues were the travel (which took 4 hours on the way there and 3 on the way back; even as a passenger that is really a lot for my poor brain to cope with. I find it very challenging neurologically to be in motion and to have such a lot of visual stimuli rushing past at the same time); the heating, which despite other people saying they felt cold was on really high and it was the hottest house I have been in for a long time (which obviously is really bad for me in terms of POTS as it means my blood pools more easily and less gets to my brain which makes me feel worse and have lower stamina and more neurological symptoms, like tolerance of noise…); and also the noise!

When there is noise my stamina is very limited and the combination of Xmas music on a loop and/or a tv turned up loud for some of the family who can no longer hear very well (and refuse a hearing aid) as well as the conversation of up to twelve people on top was at times hard to bear. Added to this was the noise of a house full of people when I was trying to rest, especially when a few drinks had been had, despite my ear plugs! People really did try so I am not blaming them, it’s just that normal festive behaviour and this illness do not mix. It is not like everyone should sit and shiver in several jumpers in silence just so that I can “do” Xmas!! It would not be fun for me or anyone else that way.

Overall it was a successful visit and I would take on the journey again when things would be quieter and hope that perhaps I could be able to leave the house when there next time to explore the city a little. It did feel strange to just be in the house all the time and not be able to situate it or explore; which seems ridiculous as I rarely go out to explore my own city, but when you go somewhere new I suppose you feel it more keenly that it is the normal thing to do. I know there were art galleries within a ten minute radius, and that hurt!

I have been feeling a bit stir-crazy actually and the trip away almost added to it for the reason given above. It gave me a sense of adventure if anything! I have not left the house much for a long time, other than for appointments, and the weather has been a big part of this. It has been just freezing with snow and ice everywhere – hardly wheelchair-friendly. I did go over to see a friend before Xmas and that was really nice, though it felt so surreal and I realised it was nearly a year since I had visited her home. She has had to visit me most of the time in the last year. Another reason is that my partner is just so busy and there is no-one else to take me out. I really find it hard to go anywhere without my wheelchair and that means being accompanied. I need to perhaps just take a taxi sometimes and sit somewhere interesting and comfortable for a while, but finding somewhere comfortable (in terms of chair, but also noise etc) is quite tricky.

Good things already planned for this year are a lecture about printmaking at a local university at the end of March. It is just an hour so I am going to give that a try if I can. Also we have booked tickets to see Iron and Wine in concert, which is also not for a while, but something to look forward to. Some of the most memorable and best things I did in 2011 were going to concerts, which has become easier now that I can sit in my wheelchair, so I hope to keep finding good people to see this year. It is great to go out with my partner and share such experiences with her. We don’t do enough fun things together.

It is my birthday this month and some time has been kept clear to do “something”. It is not yet clear what I will be up to doing, or what the options are but I am looking into it!

I hope to continue with my art immersion at home (see blog post on my creative blog) and finish the painting I am working on and move on to the other many creative things I want to work on. So many ideas, so little energy and ability! Never mind, art is a good distraction from illness. I also want to read more. I have got a Kindle for Xmas, though I had it early, and I am really loving it and how much easier it is for me to read with than a real book.

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Well, it’s 2010. Happy New Year to all of you! As most of you have health problems like my own i would like to wish you all a better year in your bodies than last. I am certainly wishing it for myself, as i don’t want to be negative but this last year has been bad on that front. A little improvement would go a long way and just make life a little easier for myself and those around me. I hope we can all see some personal progress and if not, then some medical/research progress would come a close second so we can see some hope of change a-coming…

Here is a candle flame i took a picture of last night, seeing in the new year:

So i woke up this morning to unexpected snow! My partner went out and brought back some beautiful photos:

I desperately wanted to go out and take some myself, but i resisted as i knew it was a bad plan. I took a picture of my redcurrant bush through the window, which looked nice:

There is more snow forecast so i am hoping to take some more another day and maybe leave the house, even if i don’t get far there might be something different to see. It will certainly make things look nicer than usual!

As i contemplate the New Year, my concerns and feelings are much the same as i expect they were last year… how to manage my time and energies to allow me to do things i enjoy and not get bogged down in essential daily activities and medical/health-related appointments (although to actually be able to go to them would be a change on recent form!); what to focus that “excess” energy on for the most benefit to my mental/physical wellbeing; how to express myself creatively; how to spend time with people; how to give my partner a break from my illness and the extra pressure it creates; how to give myself a sense of a break, when i cannot really have one; how to plan for the future when i don’t know whether to assume the best or the worst or something in between…

Most of all i just want to see a bit of improvement, to be able to do a little more, go out a little more, eat more varied foods, be in less pain, feel a little stronger and have some concrete basis for hope that the rest of my life will not be like this, or worse. I would hate to look back on this past year and say that compared to the next it was a good one, but i know it is possible. I am a little scared of that. All i can do is stay strong and as positive as i can and see what happens, i am willing it to be better, i don’t know if that will help but it is all i have got, so that is what i will do. Onwards…

ME/CFS Awareness

ME/CFS Awareness

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